I was raised by an obstetrician who used to take me with her for weekend rounds. She was a single parent, and I was shy and bookish, never wanting to stray far from her orbit. It was a convenient arrangement.
She’d drop me at the nurses’ station, where I’d help unload speculums from the sterilizer or write the names of new admits on the dry-erase board. I’d wander to the nutrition room, stocked with saltines and those little juice cups with foil lids. I’d stop by the nursery, and, transfixed, stand with new dads as we watched their plump newborns roll around in lucite carts. Next to the nursery was a glorious standing linen warmer, where I’d take armfuls of blankets—which, if you’ve nuzzled into a pile of laundry straight from the dryer, you know the distinct pleasure of—and build forts or read Little Women in the call rooms.
I was fascinated by the swift order of things, curious every time I saw someone whisked off to the OR . . . and plainly horrified to learn what a circumcision was! But I knew I liked this place, preferred it to home and certainly to school. The buzzing sense of purpose and the kindnesses exchanged planted memories that would yield a particular fondness for the world of medicine.
Because I’m still of an odd breed that feels at ease walking through badly lit, linoleum-floored hallways in scrubs and eating cafeteria food at insensible hours, here I am today. I’ve become a nurse. I’ve been a patient. I’ve watched both friends and strangers move in and out of the vast and complicated maze I used to play in. As children do, I perceived the world as uncharted territory and took joy in the process of understanding its convolutions. While the curiosity persists today, the romanticism has worn off, to say the least.
We speak often of the miracles of the world of modern medicine, and at its height it is miraculous indeed. But like all worlds, it has an underbelly, one you’re likely familiar with if you picked up this book. The spaces we navigate in pursuit of our healthcare today can be confusing, chaotic, and defeating. A recent article stated, “In the 21st century, we still have to come to terms with the absurd reality that it is significantly safer to board a commercial airplane, a spacecraft, or a nuclear submarine, than to be admitted to a U.S. hospital.”1 An absurd reality that’s difficult to reconcile, as most of us don’t enter a hospital of our own accord. With alarming consistency, the purpose and order patients rely on when they enter the world of medicine is revealing itself to be uncomfortably tenuous.
It’s interesting to come to love your profession while periodically losing faith in the way it functions. To be a nurse today is to tolerate the dissonance. It’s to become acutely aware of the fractures in our medical infrastructure by witnessing things fall through them everywhere from community clinics to operating rooms.
Since becoming a healthcare professional, I’ve sat in on appointments where providers raced the clock and patients weren’t able to say much of anything. I’ve listened to patients, in turn, tell me the intimate details of their concerns and expectations and then watched them fall silent and nod placidly when a team of white coats came into the room. I’ve seen medical error impact most people at some point, whether or not they knew it, and I’ve witnessed the insidious forms of racism and sexism that still affect how people receive care.
I faced these realities outside of my job as well. My grandfather died prematurely from misdiagnosis. My dad once sat in an ER with a pulmonary embolism and was told he was just tired and needed to go sleep it off! (In the chapter “When You’re Having a Baby” we’ll see how Serena Williams was ignored on this front, too.) My stepmom filed for bankruptcy because of ICU medical bills. My mother, the MD who used to tote me along to the hospital, underwent aggressive chemotherapy unnecessarily.
These challenges aren’t limited to my family, of course. Since I’ve become a nurse, I’ve started to tune in when healthcare comes up in conversations out in the world. Whether it’s with a Lyft driver, a friend, or a stranger—similar trends emerge. People are unsatisfied with their primary care provider. Often they don’t have one. When they do show up for routine appointments, people say it’s rare to feel listened to. Many instead tell of having their pain dismissed outright in a hospital (most patients facing this predicament are women, by the way, which we’ll get to in “The Female Patient”). These stories are typically accompanied by a collective air of disappointment and resignation.
The confusion, too, is universal. Whether recounting a series of appointments for a chronic illness, or a hospital stay, many struggle to reconstruct a narrative because the system struggles to explain things in a useful way. Other stories are more black and white, like a classic where the narrator goes to the ER for something minor (because it was a weekend and they didn’t know where else to go) and leaves with a bill far exceeding their monthly income.
Some experience these adversities despite having access to care, and others because they can’t access care to begin with due to the health inequities that pervade our society. We don’t all enter the world of modern medicine from a level playing field, but the confusion doesn’t discriminate. I’ve met college-educated adults who don’t know which screenings are covered or when they’re due. Highly organized and diligent individuals who are at a loss when it comes to navigating their aging parent’s sudden hospitalization, especially dealing with a team of fifteen doctors at a teaching hospital.
So, no, these are not our glory days. The blame, then, flies off in multiple directions. Some providers blame patients (burdening the system with unhealthy lifestyles). Patients certainly blame providers (too rushed, too greedy) or politicians (some want to give everyone healthcare, and others want to take it away). Everyone certainly blames the medical-industrial complex. These frustrations transcend our differences. We meet them with the same disappointment regardless of political affiliation or social standing or belief system. No matter who you are, when you’re sick, you don’t want to navigate a maze. What you want to do is nod to somebody and say take care of me and trust that they will.
To be sure, there are incredible individuals and organizations trying ardently to fix the broken aspects of the system and deliver better care, but the conversations are rarely public facing, or inclusive of patient input. They rarely address how patients can advocate for themselves in these highly challenging, precarious circumstances. In the moments I get a seat at the table, I ask why. What can patients themselves do to counteract these forces? The responses from practitioners, scholars, and administrators alike reveal a belief that the average patient can’t understand or be expected to address these issues. It follows that despite our talk of patient-centered care and personalized medicine, we neither expect nor help patients to retain agency in action.
The most profit-driven institutions in the healthcare system, Big Pharma and the insurance industry, count on it remaining this way. Disempowered patients—whether incapacitated due to illness, or illiterate in matters of healthcare—enable them to make more money and reinforce the existing cycle. (This book isn’t, however, strictly about the current state of the medical system and the myriad ways it’s broken, and its purpose isn’t to fearmonger. There are enough independent sources of that!)
On the other side, many of the protagonists of this story—those trying to change the medical system for the better—assume that those of us on the inside can fix it by ourselves. For patients, this means accepting moving at a snail’s pace until the problems with the healthcare system sort themselves out.
In the meantime: How can patients advocate for better care on their own behalf? It’s a working question I pose to the healthcare community at large, and one I attempt—with the thoughtful input of many patients and care providers—to answer in this book.
Ultimately, we will take a populist approach. If I am emphatic about one thing, it’s that I believe in patient agency more than any other force in the healthcare system that stands to alter it. I believe in the notion that patients can take concrete steps to learn and act to change tired, ineffective dynamics and get better care—and they can do so more effectively and immediately than industry leaders can. Moreover, there are things patients, and only patients, can do for themselves to achieve better healthcare. For that reason this book is about, and for, patients, and by extension, you.
I’m a begrudging optimist, but I’m pragmatic, meaning that I fully accept that you and I might never see the world of medicine in the United States become whole and functional. At the same time, I’m certain each of us can take steps to better navigate a perilous terrain with our best interests in mind. We can find allies within it, take advantage of underutilized resources, seek out information that’s not readily offered, and learn, in ways large and small, how to ensure that patient well-being is truly the core priority of each medical encounter.
The essential point about this guide is that it’s different from others on the subject for the simple reason that I’ve been trained to think like a nurse, and nurses are the fulcrum of the healthcare industry.
In a TEDx talk in 2016, I told Harvard undergraduate students that they should consider becoming nurses, taking their freshly signed diplomas and rigorous training in the sciences and humanities to a field commonly thought of as vocational. This is because, after patients, I believe nurses are best poised to change the future of healthcare.
Today, registered nurses spend more time physically present with patients than any other healthcare professional, and as a consequence we see and hear a lot. We maintain a vantage point markedly different from that of the MD, the scholar, the journalist, and the policy maker. We are intimately familiar with the complexity and multiplicity of the patient experience, as well as the systems in healthcare that fail to acknowledge it. We witness the system’s barriers regularly, and in turn we come up with creative solutions to sidestep its most vexing realities.
Donna Diers, former dean of the Yale University School of Nursing, and Claire Fagin, former dean of the University of Pennsylvania School of Nursing, describe the profession as one born of the “indifference to power for its own sake . . . the pleasure associated with helping others from the position of a peer rather than from the assumed superordinate.” They said it well. Nurses prefer to be shoulder to shoulder with our patients, looking at the problems laid out before us, creating a plan together.
Voted the most honest and ethical professionals in public Gallup polls every year (except in 2001, when they lost to firefighters), nurses are a bastion of trust in a system that invites a lot of mistrust. It follows that when you’re a nurse, people like to tell you things. You become a vessel for stories, and you learn how to listen. Whether someone I meet at a party launches into telling me about their yeast infection, or their pursuit of a diagnosis, or the injustices of their recent hospital stay, the walls between public and personal, professional and civilian, readily subside. This trust and connection is a privilege, and it is not lost on me that it’s what allowed this book to come to fruition.
I don’t talk much about the work of nursing directly in this book, something that became evidently clear to me upon finishing it. But I privilege nursing as an organic consequence of my own experiences in healthcare. Every aspect of this book was shaped by the work and theory of nursing, in which patient advocacy and empowerment is a foundational principle. I hope this book is a testament to that way of thinking, and to the work of my colleagues, who are out in the field this very moment as I sit at a library carrel. I hope that reading this book prompts you to turn to the nurses around you with a new spirit of collaboration and understanding.
Last, and most important, this book is a field guide. It’s not diagnostic, or prescriptive, or absolute. It doesn’t go in depth into any one disease but lays out general truths and tools one can use when seeking care, young or old, sick or well. It’s called an essential guide, but in truth you are the guide.
Self-help and how-to books make me a bit nervous when they say outright that if you follow steps A, B, and C, things will work out swimmingly. I’m wary of anything giving the impression that its solutions to complex issues are simple and instant, so long as you retain all the information and act on it as directed. This book doesn’t work like that––not because changes won’t result; they will—because the content of this book doesn’t have to be retained in one fell swoop. Perhaps the most pernicious aspect of the modern healthcare system is that patients often resort to dealing with it when their defenses are at their lowest. Traversing the healthcare sector is daunting for anyone, but especially for someone whose emotional, physical, or financial reserves are depleted. This book attempts to initiate one major paradigm shift in the existing healthcare industry—that patient agency is integral to better healthcare—but beyond that, it can be read in pieces and returned to at various points along the care continuum, throughout life. Read it at your own pace, and implement these suggestions as you see fit. I hope it serves you as a lifelong companion.